June 2018
Newsletter

“That millions of sick people throughout low-and-middle-income countries suffer horrendous pain because they cannot access the morphine they need is a tragedy – the result of unwarranted fears and a failure of governments to care for those most in need”, says Mr Jonathan Leighton, Executive Director, Organisation for the Prevention of Intense Suffering (OPIS), in the IDHDP newsletter.

“A chronic lack of opioid drugs leaves millions of people throughout the developing world to live and die in unrelenting, excruciating pain. It is a particularly bitter irony in India, which historically had the world’s biggest legal opium poppy industry.”

The five countries that topped the list are Iceland (scoring 97.1), Norway, the Netherlands, Luxembourg and Finland and Australia. India’s score is an abysmal 41.2. in particular, India is reported to have done poorly in the areas of tuberculosis, rheumatic heart disease, ischemic heart disease, stroke, testicular and colon cancers and chronic renal disease.

On the positive side, India’s score improved from 24.7 in 1990 to 41.2 in 2016. But at the same time, the inequities have grown too, with a widening gap between the highest and lowest scores. Goa and Kerala do the best with more than 60 points, while Assam and UP are at the lowest, each below 40.

When we reflect on the Economist’s Quality of Death index, it is obvious that the quality of end-of-life care, comparatively, is a lot worse than general healthcare in India – at 167th place out of 180 countries.

Long Way to go!

Quoting an eye-opener by Dr Sudha Sinha and colleagues in the Journal of Palliative Medicine, Cancer Treatment and End-of-Life Care, Pallium India’s friend, Dr Aju Mathew writes: “75% of patients in this study from a government hospital in India received end-of-life chemo within 30 days of their eventual death. 50% within a week. Similar numbers in West are ~ 20% and 10% respectively.”

“You matter because you are you and you matter until the end of your life.” – Dame Cicely Saunders

The Worldwide Hospice Palliative Care Alliance has announced the theme for World Hospice and Palliative Care Day 2018: Palliative Care – Because I Matter.
This theme was selected following an open consultation with people directly affected by serious illness, WHPCA members and supporters, and global hospice and palliative care advocates.

The Central government has agreed to provide easy availability of certain narcotic drugs and other opioids for terminally ill cancer patients.
An assurance in this regard was given by Union Ministry of Finance in a letter to Punjab’s Industry and Commerce Minister Sunder Sham Arora who lost his wife to this dreaded ailment.

The letter promises to remove all regulatory barriers perceived as hindrances to the availability of morphine and other opioids for genuine medical needs such as pain relief or palliative care and de-addiction treatment.

Tamil Nadu is putting all its efforts to integrate palliative care into their healthcare system. They are now training their nurses from five districts. These nurses, being the most vital members in a multidisciplinary team, are here at our Trivandrum Institute of Palliative Sciences (TIPS) for the six weeks course which began on May 15.

We thank Tamil Nadu NHM mission director Dr Darez Ahmed IAS, Dr Jerard M Selvam DD (NCD), Dr Jayashree (State Program Co-ordinator -NPPC), Dr Abhijith Jose (Consultant) and the entire team for this initiative and for setting a model for all other states.

My third visit to Andhra Pradesh, and my first to Vijayawada, was to attend an opioid availability workshop. Quite different from the usual scene, this workshop was led by the Director General, Drugs & Copy Rights, Andhra Pradesh, and CEO of Dr. NTR Vaidya Seva Trust, Dr Ravi Shankar IPS, a rare combination of healthcare and bureaucracy. Dr Nandini Vallath (Consultant- TIPS), Dr NS Raju (Age Care Foundation-Pallium India), Dr Vidya Viswanath (Asst Professor, HBCH&RC), Dr MBR Prasad (Director, AP Drugs Control Administration) and Dr Ravi Shankar IPS were the key speakers. After the presentations, came the panel discussions. The participants included doctors in various specialities, pharmacists, dealers and concerned government officials from across the state.

Many questions were raised, regarding Narcotic Drugs and Psychotropic Substances (NDPS) Amendment Act (2014), NDPS 1, NDPS 2 and transport license in the state of AP and palliative care training.

By the end of the day, we were hopeful that palliative care will be taken forward by the state with the support of Dr NTR Vaidya Seva Trust which is already planning to include “palliation” in their empanelled hospitals.

Age Care Foundation, our collaborators in AP, received Recognized Medical Institution (RMI) status after meeting all the criteria recommended in the amended NDPS Act. This now helps them stock and dispense less expensive but strong opioid analgesics meant to relieve excruciating pain.

Following the workshop, a sensitization meeting for doctors was facilitated by Dr Ramanamma through IMA Vijayawada. Dr Nandini Vallath gave a talk on palliative care and emphasized the importance of communication and symptom management. The session ended by 10:00 pm and then the team travelled to Visakhapatnam. Our train was at 1:25 a.m. but none of us was tired, because the day had given us a lot of hope – a lot of hope indeed, for palliative care in Andhra Pradesh.

The next day, in a hospice at Vizag, we met a young Mathematics graduate from Odisha. She speaks Oriya, Hindi, English, and a little Telugu. I had a very interesting conversation with her. She said, everything in this world is related to Maths. I informed her that my grandfather, who was a maths teacher, used to tell us the same. I learnt an Oriya phrase from her: “tome kemethy acho” which meant “how are you”. She kept asking for her “favourite smiling doctor” – Dr Vidya Viswanath. It had been two days since Dr Vidya came to the hospice. I apologized and told her that her doctor was travelling to attend some important meetings.

This young girl in end stage with metastasis had reached AP with pain but now she is free from pain. This could be why Dr Vidya became close to her heart, as she had given her pain medications.

As I speak to her, I reflect… These very effective and affordable pain medications can relieve suffering, but do not reach all the people who need it. Why is it that we are unable to make everyone pain-free? Why should one travel all the way from Odisha to Andhra Pradesh? Why can’t all doctors be close to their patients? Does pain include only physical pain? Absolutely NO. This maths graduate was reading her favourite book in the hospice when we were there. Mrs Satya, a social worker and volunteer enquired about her favourite dish and prepared it for her the very next morning. The young patient’s smiling face reminds us of so many people who could not smile at this stage of their illness. This hospice is a pivot of caring doctors, nurses and volunteers.

In the evening my colleague and I went for a walk in the beach at Vizag. The entire beach was spic and span, in spite of the crowd – this is something we should learn from VUDA (Visakhapatnam Urban Development Authority). Dustbins are placed at fixed distances. I managed to get scolded in Telugu from a man when I unknowingly dropped a piece of paper into his black bag, mistaking it for a dustbin. However, I am glad it happened, as he also directed me to a real dustbin rather than nowhere.

The delicious food of AP is also worth a mention, with a special thanks to pessaratu dosa made by aunty. Our thanks to Satish (our project manager) who took us for a very special tea, to the sea port and to a Punjabi Dhaba, and to Raju sir for providing us with an Andhra meal. “Good food is to be enjoyed always!”

On our last working day in AP, we had a meeting with Sathya Sai Seva Trust. Dr Raju explained to them about palliative care and sought their help in reaching out to the common man. The way he advocates for palliative care is so convincing that nobody could say no.

We request you all to help us reach out to everyone who is enduring health-related suffering, in every part of our country.

I learnt a lot from Dr Raju, Dr Vidya, Dr Ravi Shankar IPS, Dr Nandini Vallath, Dr Ramanamma, Mrs Sathya, hospice and Sathya Sai Seva Trust. Thank you all for giving us a space and special thank you to Satish for putting in all his efforts to make this happen.

As part of the collaborative efforts by Pallium India and Ganga Prem Hospice to improve palliative care awareness and access, the first palliative care centre in Uttarakhand was opened in the District Hospital of Uttarkashi on 14th April, 2018. The OPD was inaugurated by Gangotri MLA Gopal Singh Rawat and District Magistrate Ashish Chauahan. Gopal Singh Rawat said that patients suffering from serious diseases and near end of life will be looked after in the new palliative care centre. He emphasized the importance of providing special attention and treatment to patients suffering from cancer and other serious illnesses so they do not feel abandoned or ignored.

Two male and female nurses have already been employed in this centre. Efforts are on to engage two more nurses for efficient functioning. A doctor too will be brought in to administer morphine, etc. The aim of the centre is to ensure that patients in their end of life are cared for with love, patience and attention.

This is a very promising development in Uttarakhand, and we hope this will pave the way for further progress in the field of palliative care delivery.

A Cancer Camp was held on April 12, 2018, organized by Pallium India and Ganga Prem Hospice.

Nurse Lini Sajeesh from Perambra in Kerala gave up her life in the service of the sick and ailing.

It was the first outbreak of an endemic of an hitherto almost-unknown virus – the Nipah virus. For Lini, it must have been just another patient with fever. She nursed the person with compassion; she clearly was close enough to contract the viral infection and sadly, died.

Lini, we revere you; we wish all strength for your family to cope with the loss. We pray for you and for them.

How many Linis will we lose – Nipah virus now, something else later? There is a pattern to our reaction to calamities like this: a lot of emotion, a lot of tears, and soon, we forget. And we bring out the compassion and tears at the next calamity.

Pallium India swears to do something at least in our own work setting. Are we protecting our nursing and other clinical staff enough? Are enough safety measures in place? We swear to look into these things and to establish a system that will sustain itself so that our clinical staff, in future, will stay as protected as possible.

‘Need palliative support for cancer, counsellors to address depression’

Ashla’s story is about a remarkable young woman who became severely disabled after falling from a train in India. She has overcome enormous challenges to become Executive Assistant to Dr Rajagopal of Pallium India.

The suicide note of ADGP Himanshu Roy, which mentioned depression due to cancer, has underlined the need for improved palliative care support and counsellors for terminal diseases in the healthcare system. India records one million new cancer cases every year of which six to seven lakh patients die, a Lancet oncology study states.

International Association for Hospice and Palliative Care (IAHPC) is offering a one-year free membership to students of qualifying institutions who are currently enrolled in a palliative care post-graduate program for any health-related field (Medicine, Nursing, Psychology, Social work, Pharmacy, Spiritual Care, Physiotherapy, Pharmacy, etc.) leading to a formal degree (Diploma, Masters, PhD, Specialist training, and Fellowships).

To qualify, institutions must fulfill the following criteria:

Academic institutions which are currently institutional members of IAHPC.

Dr Zipporah Ali, the palliative care pioneer in Kenya, received the Women4Africa International Humanitarian Award at the Women4Africa award event held in London recently. The award is in recognition of all the palliative care providers in Africa and across the globe and the many patients (and their families) who deserve better quality of life.

All of us at Pallium India are proud of our four colleagues Gayathri, Sherin, Sajan and Dr Parvathi, who successfully completed 33 clinical courses offered online by Centre to Advance Palliative Care (CAPC), New York. They are now equipped to help our patients and families better than ever.

Let us thank Dr. Ann Broderick, our volunteer coordinator of international visitors and a friend of Indian palliative care from Iowa, USA, for encouraging our team to take on this course.

Pallium India celebrated International Nurses Day on May 12 by honouring our nurses and thanking them for what they do.

Pallium India’s friend and volunteer Sunshine Mugrabi writes about a recent film on Netflix:

A woman lies in a hospital bed, her head shaved, her face pale yet luminous. The doctor at her bedside talks with her in a gentle voice, while her social worker looks on.

The camera pans to a whiteboard on the wall. A child has drawn a picture of her, with the words “Get well Mom” next to it.

This is the opening scene of “End Game,” a new documentary on Netflix that delves into the lives of terminally ill people during their final days.

A film about death and dying might not be most people’s idea of a fun evening’s entertainment. But the documentary is a beautiful meditation on what makes us human–in all its fragility, fear, humor and sadness.

The movie was shot in San Francisco, California in two locations: The University of California, San Francisco Medical Center, and Zen Hospice, a homelike facility on a residential street.

“End Game” grapples with death in close up, intimate ways rarely seen on screen.

As Mitra, the woman in the opening scene, reaches the end of her life, her husband Hamid and mother Vaji must make difficult decisions. Should they continue treatment or move on to palliative care? Should they donate her body to science?

In one poignant scene, Vaji and Hamid meet with a doctor who wants to enroll Mitra in a research project to study her cancer. This means opening her up after her death and removing the organs the cancer has attacked.

Vaji asks Mitra’s doctor what he would do if this were his wife or daughter.

“Be honest,” she urges.

It’s a good question. But he answers too fast that he would go ahead with it. This shows the empathy gap many families experience when dealing with doctors.

Vaji breaks down sobbing.

The scenes at Zen Hospice show a warmer atmosphere. Pat, an African-American woman with incurable uterine cancer, tells her story to a volunteer. Her eyes fill with tears as she recounts the moment her doctor gave her the news.

The tears spill over, but she also smiles. She talks about the relief she feels knowing she’s monitored and cared for. The day to day support is her focus now.

Zen Hospice Executive Director Dr. B.J. Miller fills the screen with his presence. He’s handsome, with chiseled features and salt and pepper hair. He talks about his philosophy, which is that rather than avoiding suffering, it’s better to move towards it.

Death isn’t hidden away there, he explains. This is followed by footage of staff members covering a body in flower petals.

Dr. Miller had his own brush with death. When he was in college, he and some friends were playing around on a parked train car. He was electrocuted. The doctors amputated his left arm below the elbow, and both of his legs below the knee.

His disability makes it possible for him to connect with patients and their families in a way that others might not, he explains. He doesn’t hide his amputations. Far from it–he wears short sleeve shirts and shorts that reveal his prosthetic limbs.

In one scene, he meets with a patient named Thekla, encouraging her to get comfortable with the idea of death. She says she has failed to “make friends” with death as he had assigned her to. So he suggests she find ways make the subject part of her life, not necessarily in a friendly way.

“The scary part is the unknown and the lack of control,” she says.

There’s camaraderie in this interaction. A partnership in which both are learning how to hold the mystery that is death.

In another scene, Dr. Miller welcomes a new patient to the hospice, a frail, emaciated Asian man. Dr. Miller tells him he’s become popular there.

The man’s face breaks into a near toothless smile. Later, the camera focuses on him as he’s being bathed in bed, bubbles covering his bony chest.

The film turns ordinary moments into meaningful ones. It shows that when death is near, it’s impossible to escape the reality that each one of those moments could be the last.

In this way, “End Game” succeeds in bringing out the complex yet beautiful experience that is death.

“This part of my life is wonderful,” Tekla says. “And who would’ve thought?”

The leadership development initiative (LDI) led by Dr Frank Ferris and colleagues was an epoch-making part of global palliative care history. From various parts of the Global South, 39 leaders got trained by this innovative programme.

Pallium India has a collaborative project with Sri Balaji Vidyapeeth (SBV) University, Puducherry, to integrate palliative care into medical and nursing curricula, the first of its kind. Mrs Anu Savio Thelly of SBV writes:

“I’ve been a volunteer. I wanted to do something that I could be proud of, something that would help me as well as other people. I felt very good working in the stall”, said Ananya, 1st year medical student.

The response for the stall was amazing. The participating students and faculty of SPECTRA 2K18 appreciated the good steps taken up by the students for capacity building, humanitarian and sharing concerns.

There were handmade crafts, hand painted umbrellas, and T-shirts for sale. They also arranged sales for items donated by MGMCRI students and faculty. Lots of fun games were also conducted.

Final Year student Vignesh said, “Volunteering in the shop has certainly provided me with a strong insight into what shop work is like and I was surprised to find how much I really enjoy doing it.”

The money they have raised will be used for supporting poor patients, their volunteering works in various orphanages and old age homes and for creating awareness regarding palliative care treatment for the needy.

“We are so proud to see these kind of self-driven compassionate activities from students,” said Dr Uma Narayanamoorthy, Asst. Prof. in Pharmacology, a faculty volunteer in the stall.

“We are planning to scale up the activities in the future. Let our students be role models for other medical colleges,” said Prof. M. Ravisankar, Dean, MGMCRI. Dr Partha Nandi, Vice Principal (Student Affairs) of MGMCRI congratulated the students for their effort.

Pallium India congratulates the teachers and students of SBV for organizing this event and we look forward to more such initiatives.

There seems to be a “caste system” among symptoms too. What can be detected by an MRI scan gets attention. Not simple things like constipation. Obstinate constipation kills.

“My brother, a cancer patient was brought here from a private hospital in Pattom with swollen abdomen; the doctors there said his kidney is down but the doctors here found that the swelling was due to constipation… Within hours, the staff here relieved him of that condition,” says Raju from Varkala.

Palliative care is about looking at the person – not just the scans – thinking of his problems from his point of view and looking for solutions, some of which can be absurdly simple.

Just because he is paralysed from the waist down doesn’t mean Suresh Kumar has lost his spirits. Hailing from Nedumangad, all this 44-year old man needs is his hands and willpower to eke a living. This monsoon season, umbrellas made by Suresh will hit the market. Bedridden for the past 13 years, Suresh has been making umbrellas every year with as many as 300 ones sold before the rain starts. Anticipating the school reopening season, this year too he is busy creating another batch. His clients are mostly his neighbours and small-scale organisations.

When Dr Adam Ruben received an email inviting him to speak at an international scientific conference in Dalian, China, he was overjoyed. He thought it would be a life-changing, career benefitting experience. Soon he realised that this was one of the many non-existent conferences that you pay to attend and finally would never happen.

In an article titled “Dubious conferences put the ‘pose’ in ‘symposium’”, Dr Reuben writes that it is not easy to “spot the difference between a real conference and a fake one” and that early career scientist might fall for this trap, thinking it might benefit them.

The “invited” speaker who has already paid a registration fee, would be informed that “oops!—the conference had been canceled for one reason or another, but darn it all, those registration fees just couldn’t be refunded.” A “predatory conference” can even attach your name and affiliation to itself, hoping to appeal to more attendees.

I’m left pondering the way patients brought together by serious illness connect with each other’s journey. While doctors provide medical explanations, patients engage with each other on a different and more practical level.

Though they’re not conventional friends, seldom maintaining contact outside medical facilities, they’re connected by the experience of illness. It’s not surprising, then, that when a patient dies, the effect on other patients can be profound.

In a California prison hospice, inmates become caregivers to fellow convicts who will never make it out alive.

The California Medical Facility, a medium-security prison in Vacaville, midway between San Francisco and Sacramento, houses general-population inmates as well as those with health conditions and specialized medical needs. It is home to 2,400 men — some young and healthy, others disabled and sick, and then those in the hospice, who are dying.

PARTING SHOT

Any doctor might become a different doctor if they go through the experience of a patient, despite the special privileges that they may get in their own hospital.

Read the experience shared by Dr Marc B. Garnick in his article, Filling in the Gaps – the agony of looking at his own image on a screen with a second nasty cancer, the fatigue that he went through, the sheer burden of paperwork.

Reading this all makes one wonder whether we appreciate what the typical Indian patient goes through!

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.